Wednesday 21 September 2011


I'm not really back, but this stuff is eating me up from the inside so I had to get it out. Nothing to do with adoption. This one doesn't get a tea alert, it gets a serious TMI alert instead. Oh, and if you want to be my friend for-evah? Help me figure out the chords to this thematically-appropriate song. It's been stuck in my head for days. 

A few years ago, we went to the big hospital in Oxford for a series of genetic tests. Well, I say we went but J was just there to hold my hand- it was my arm that they took all the blood from.  We got the results we knew we would, but that didn't make receiving them any easier. Seeing it all in black and white was what pushed us, eventually, after a lot of grieving,  towards adoption. What I feel like I should  say here is that I am grateful for what we went through, then, because it led us to our wonderful children.  And our children are wonderful, of course, but I still can't feel grateful for those months, for that entire year. I don't know what to say about that time of my life except that I can't remember a single good thing about it. It was a season of grey despair. 

And now I have to go back to the same hospital for a new round of tests. I don't want to go. 

It's nothing to do with babies, this time. On this occasion I'm trying to avoid dying young of a gene-linked cancer. I don't even know if I've got the gene yet - hence the tests. My grandmother had it. She got it from her mother and passed it to my mother. I don't yet know if she passed it to me. This is the kind of gene where 'breast cancer runs in the family' becomes a hilariously colossal understatement.  This is the kind of gene where if you've got the gene, you'll almost certainly get the cancer - breast or ovarian, or maybe melanoma. "Don't forget to check your freckles!" one of my aunts told me on our recent trip back to Australia. "People always check their moles but freckles can kill you, too. Don't forget to check your freckles". So I've started checking my freckles, but it's not really possible to keep an eye on my ovaries, seeing as how I don't have X-ray vision. Mammograms, for women who carry this mutation, are scheduled regularly and frequently but lots of doctors recommend managing the risk by just getting everything removed. Hysterectomy including ovaries. Total mastectomy, with optional replacement breasts in the cup size of your choice. 

I've known about this family risk for years and years, since it was my mother and her sister and brothers getting the tests (because yes, men can get breast cancer too and how annoying would that be?) But I've always thought it was something to think about later, in the future. I thought the risk really kicked in after menopause. Occasionally when family would ask me whether I was going to get tested I would say that I was limiting my gene mutation diagnoses to one per decade and this next one wasn't due until 2017. 

But then I was talking to my cousin Beth a few weeks ago and she has just had tests done. She came back positive - unfortunately -  and told me that her doctor was horrified that she had never had a mammogram. She was pretty much marched straight from the diagnosis chair into the medical imaging suite, where they gave her an MRI rather than a standard mammogram because of her age and risk.  She's not yet thirty five. 

Forgive me if my medical information is not as good as it should be, but I'm getting it all second hand through Beth, seeing as how I'm too chicken to get the tests myself. I couldn't believe all this when she told me, and we had the conversation about how we thought the risk started at menopause but no, apparently, if you're going get your bits removed it's sensible to do it when you are five years younger than the youngest age you have had a relative die. "Weren't all Grandma's sisters in their fifties when they died?" I said to Beth.  And she said no - Grandma's mother died aged forty three. Breast cancer. Her oldest sister: ovarian cancer. Forty three. The next: breast cancer. Also forty three. And another. You can probably guess what age she died, too. 

My grandmother and her baby sister Isobel were the only two girls who lived. Grandma got breast cancer too - at forty three- but survived, maybe because she was the youngest of the ones who got it, because treatments were more advanced than they were for her mother and sisters. I wanted to mention her other sisters by name, but I can't remember all of them.   I don't know their names, because I didn't know them. Because I never met them. Because they all died at forty thiree. This is the kind of suckage that words really don't begin to touch. 

I talked to my other cousin, Anna, about it. She is in the middle of the tests, and she is hugely upbeat about the whole thing. She's upbeat about most things; I thought this might finally push her over the line into pessimism but apparently not. She doesn't see it as a big deal, and she admitted that there. is a tiny part of her that will be disappointed if her tests come back negative. "I am totally looking forward to my new boobs!" she told me. "I'm going to go up a few cup sizes and then watch out, boys, because I am going to be flashing them all the time". And I had to laugh because I have no doubt that she will.  

Talking to her helped, but I keep lapsing into flat despair about the whole thing. Why can't I have her attitude? Partly it's just personality, I guess. Never mind genetic mutations; I tip over into pessimism when I run out of breakfast cereal.  Partly - if I'm honest - it might be because I don't actually want new boobs. I don't mean to seem boastful, but I am perfectly happy with the ones I have currently. Seriously - of all my body parts, why remove these? They give me zero psychological trauma. (If we were talking about cancer of the buttocks, I might be singing a different tune). I'm not Anna Nicole Smith, but I'm not an ironing board either. I have no problems in that department. If I do so say myself. I don't want new boobs.

A bigger part, though, is about the operations. I'm a total coward about physical pain, and I'm terrified of those procedures. Terrified.  I had my tonsils out when I was twenty five and it hurt so much; I know it sounds trivial but believe me, it wasn't. I would wake up in the night weeping with pain. I don't want to go through that kind of thing again.  I got my appendix out when I was eight, too - also horrible- and I really thought I was done with the elective removal of internal organs. If I ditch the uterus and the ovaries and the boobs? Soon I'll just be a brain in a jar, typing on my keyboard with electronic thought pulses. 

I've seen women in recovery from these operations. It's not pretty.  It takes weeks and weeks and weeks. My brain skitters to all sorts of horrible places when I think about it. Who would look after my kids?  What if i don't get a good endocrinologist and the HRT isn't managed well? I'll get terribly depressed and my hair will fall out. And I keep remembering a description I heard of a mastectomy and how they first have to peel all the skin off your chest. Are you dry heaving yet? I know I am.  The one thing that scares me more than these operations? Not having the operations and then dying, aged 43, leaving my children and husband alone with nobody to cook for them.

Of course, thinking about preventive surgery for reproductive cancers has a few extra layers for a woman who has never been pregnant. I can't decide whether it's terribly efficient - sure, take my uterus and ovaries, I wasn't using them anyway! or absolutely heartbreaking. My uterus and ovaries? But I never even got to use them. Okay, who am I kidding, yeah, it's the second one. Some days it makes me feel so sad that I just want to howl at the moon.  

That's why I haven't had the tests yet, I suppose.  Once I get them done, if I'm positive, I have to start making decisions. And I am not ready. I don't want to end up in a situation where I am pressed into making irrevocable decisions about our next child or children, yet. I feel less and less like I want to try the fancy IVF, but I still don't feel ready to close that door forever, either. I'd rather have the luxury of the time I thought I had. I'd rather let my uterus shrivel up on its own, when it's ready.  I'd rather not have to deal with any of that. And then I get a flash of a vision of my husband hunting through the cupboards for a tin of baked beans, of my children motherless - again - as they go to secondary school and I know I have to face up to my responsibilities. 

Some of Anna's words come back to me - "Of course I'd rather not deal with this, but we are so lucky. If we were two generations ago, we would only have ten years left and then we would die and have no warning. And one generation ago, HRT was not well developed and fake boobs looked really fake. Now we really have nothing to worry about!" I know she's right, even if I can't make myself feel that positive. And believe me, I see the irony of dealing with too much genetic knowledge when my children have so little. Some days I want to push their stroller into the genetics clinic, roll up their sleeves and ask the nurse to run every test in existence, just in case. Maybe they will decide to do that when they are older, but for now I am holding off. I don't want to make this decision on their behalf. I know from personal experience that these diagnoses are not like diagnosing a virus. It's deeply, psychically, unsettling to find out this kind of bad news, if there is bad news to be had. It's already happened to me once. There's a fifty-fifty chance it's about to happen again. I know I need to make the appointment, but I can't make my fingers dial the number on the telephone. 

And of course - of course - I might come back negative. This one may have passed me by. I can't imagine the relief if that turns out to be the case. If so, I promised my sister I would get tested for celiac disease. Because guess what? It turns out that runs in the family, too, and if ignored can result in bowel cancer. "You've probably got it" my sister told me, shortly after the freckle conversation with my aunt. "You'd probably feel much better if you went gluten-free. I did."    "But I feel fine" I said, frustrated, and then she mouthed 'bowel cancer' and I went into my room and cried. I know she wants to keep me around so that we can squabble into our old age together, and I love her for it, but seriously, a third thing? Shallow end of the gene pool, that's our family, for sure. 

I can't even think about testing for that one yet, although occasionally when I'm eating a particularly delicious slice of toast I feel a stab of fear that our wheaty, crunchy days together might be numbered. What would I miss more, I wonder - bread or my real boobs? Boobs or bread? If I'm honest, the answer is probably bread. Fake boobs look more real than fake bread tastes. I don't know why I have these thoughts - It's not like I get a choice. I might lose both. I might lose neither. 

In the meantime, I know I should make that appointment. But I can't. I can't. I'm not ready to get on the healthcare treadmill if we get bad news.  I'm not ready for that next phase of life to start. I don't want to deal with it. All these molecules don't make me who I am. 

Turns out that being a grownup is seriously, seriously overrated. 


  1. oh my! this just really sucks. I'm so sorry you are at this point where decisions are looming. My mom's best friend is facing her third round of genetically-linked ovarian cancer at age 42. Her daughters (16 and 18) are being counselled to have BSO's and mastectomies. I have no words for them. Literally. No words. I'll be praying for you as you make medical decisions.

  2. Oh, Claudia! Know that I'll be thinking of you and keeping you in my prayers. Go make that appointment, friend! All your blogamigas on this continent will be holding your hand and thinking of you. This is all so stressful as it is, the results will either direct your stress or relieve them altogether. Do keep us posted!

    And on another note, I have missed your posts! I know you are taking a break, which I respect, but know you are missed!

  3. I am so sorry that you are having to go through all of this. I will be thinking of you.

  4. What a heavy burden to carry; know that we are sending thoughts and prayers every single day.

  5. I am so sorry that you have these decisions to make and that you have this legacy in your family. Yuck, yuck, yuckity yuck! Yes, sometimes, being a grown-up does stink!

  6. Both my sisters have been tested for this gene after the 1st one had cancer (breast) at 40 and the other one (melanoma) at 30 something, twice. Luckily, they both tested negative.

    For one of them, it was a no brainer to get tested. She ran right out and did it. And it wasn't the one who had breast cancer either. It was the other one. For the one who had breast cancer, it took her a long long long time to finally come to a place where she was ok with the ramifications of the possible results. That was when she finally has the test done.

    Good luck hon. The results are already in your blood. You just need to see what it says.

  7. Feeling shaky and weepy for you. In some way, if you were positive, and you did elect to have certain body parts removed, you effectively USE THEM for your children. You would be, just like the girls who went through pregnancies, sacrificing your body for your kids. You would be doing it for them, to stay around for them. I can't think of a better place for some ovaries and cancer-playground boobs than a medical waste basket in the name of living two or three more decades.

    But it's scary. And horrible. And I sure love you. Prayers my dear.

  8. OH, C, how my heart aches for you. Just do it - I'm sure you'll feel better knowing, or is that just the J in me?

    I've missed your posts so much.

    PS tell me when and I'll pray for you specifically on that day!

  9. oh man. I'm so, so sorry you have to even have this in your mind space. Holy balls.

    Also, I'd be waaaay worse off without bread than I would my boobs but that's neither here nor there.

    You know that you just initiated many conversations/thoughts about this for many people out there. You might've just saved a life, no joke. Now...perhaps you can save your own one day soon. ;)

    Love to you in this complicated mess we call life.

  10. Though I haven't had to deal with any of this stuff yet, it's so true that sometimes, ignorance really is bliss. I'm so sorry you have all of these tough decisions to make; I don't blame you for putting them off. Will be keeping you in my thoughts.

    I also just wanted to tell you how much I love your writing. You are so captivating; smart, poignant, and quite funny. I love reading your posts!

  11. I am so sorry you're having to deal with this BS. It really is terrifying and torturous, I know.

    My mom and two uncles were adopted in the early 60's; and because America's adoption laws SUCK and their mother was an Irish citizen, they weren't allowed ANY of their medical information.

    Then, my mother at age 48 got endometrial (uteran) cancer. What's worse, it wasn't caught till it was outside the uterus and in her lymph nodes. Only then, did the state release her mother's (but not her father's) health info. PCOS and cancer ran rampant...along with nearly every woman on that side of the family dying early (50 or younger) of female cancers. Great.

    Now, my middle sister and I are dealing with PCOS; and my youngest sister and one of our cousin's children are dealing with epilepsy. Coincidence? We think not.

    No matter what the tests show, knowing IS better than not knowing - seriously. You can't fight an enemy you can't see or understand. I wish you all the luck in the world that you are negative, but if you are positive you are strong and you WILL make it through to continue cooking for your babies and husband.

    ((HUGS)) from across the pond...

  12. Ugh..that is really sucky to have to think about and deal with. I will be thinking of you in the next while and praying for you in this. Darci

  13. I don't have anything helpful to say except that I would much rather have a boob job than give up toast.

    I think you're pretty strong and resilient and when you are ready to know, you'll do it. I can see that it makes sense to wait, bc once you know, nothing is the same again if the answer is not what you're hoping for. But you're in the company of strong women in your family who've made it past the knowing point.

  14. Oh My Gosh. This. Totally. Blows.

    This is scary stuff. We are thinking of you---

  15. Make the call! Take the test!

    It sucks. I know. My family is also cancer ridden. But, waiting just makes things more freaky and stressful. It is usually worse than the results. And, even if you do have the gene, you don't need to decide anything right away.

    I wish you well.

  16. Ok, your cousin cracks me up. I can only aspire to that kind of positive take-no-prisoners attitude.

    I think that you are living a very interesting perspective on the medical-history issue - with you knowing so much, and your children so little. Such pitfalls and agony on both sides. Thinking of you, and I hope you find peace with your decisions.

  17. Oh C. I am so sorry you have to deal with this BS. I really am. My family is also cancer ridden. :( So I think I will have to do many tests in the future too. Yes, it sucks, but as Mandie said - knowing IS better than not knowing. Make that call. Maybe you are worring for nothing and the tests will be negative. And if they come back positve you still have the time to make peace with it and decide what to do.
    I am thinking of you!!

  18. Hi Claudia,

    I have never commented before, because as soon as I found your blog you "took a break" so I have been impatiently waiting for you to return. If only it were under happier circumstances. I can't imagine what you are going through, I don't know how I would be in this situation, but it sounds like there is a fantastic support network around you.

    Just wanted to pass this link on to you... an old friend of mine has been diagnosed with secondary breast cancer, and is writing a blog about her journey and her hope that attitude will make all the difference so she can defy the odds her doctors have given her. This may not be what you want to read right now, but it may be something you find useful or could pass on to someone. It really is an insipational read(without being mawkish).

    Best wishes


  19. I'm so sorry. A part of me wants to say, "go, go now!," but that's easy for me to say, because I'm not the one in your situation. So I'll just say I'm sorry and hope for you that you find some peace in the situation somehow.

  20. I know this is intense. I know that it keeps you up at night and that it feels like the worst kind of pit in your stomach. I know it is beyond scary. But here's the deal, the honest, get your shit together deal, you cannot wait this out. You need to be on a level with your body that you can be functioning with and working with to maintain your health. You owe your body every single chance to do it's job to protect you from whatever it may need to. I was diagnosed with cancer when I was just shy of twenty-years-old. I had to have life altering surgery and a radiation treatment and have to be on HRT for the rest of my life. MY LIFE!!!
    You have to be f-ing brave here. I know, I know, it is like being haunted. Every time I get a blood draw, I am scared. But you need to find out. You need to know so that you can be in control and so that you can be proactive.
    I would normally not leave such an intense comment or I guess, directive rather. But please, please don't f#ck around with this ... because honestly you don't have a choice, honestly. Right?

    love and solidarity always.

  21. Yes, there have been moments (okay, decades) that I have wished I could contract a disease which causes large, symmetrically domed (but totally benign) tumors on the buttocks.

    I'll be praying for you, and for God to have GENTLE HANDS! GENTLE HANDS! as He guides you through this. He's a good God and he's utterly faithful.


  22. Claudia, I'm so sorry I'm late to this very heavy post (but still somehow had me smiling a few times--boobs vs. bread? ha!).

    I work in healthcare, and I give people the results of certain genetic tests that we don't even fully understand (I'm no geneticist for sure!) but they do impact their risk, and I am all for knowing as much as possible to protect your health. This isn't a dressed rehearsal, after all.

    But I'm sorry you are in this space, and I hope you get the best news possible. Know we are all thinking about you through this.

  23. I am so sorry you are dealing with this...but please, go get the test! Then you will know what you have to do next so you can be with us for a very, very, very long time...

  24. Oh wow, just wow. I am sort of speechless. I wish I lived closer to you so I could raise my hand and say "I'll take care of the babies while you are recovering!" Cause I totally would. All us Southern women know how to take care of each other.

  25. C- Wow. This is so incredibly big, complex and overwhelming. My heart is soo burdened for you. I will be praying for you and with you. I know His Spirit will lead you and J. It makes me think of that sermon by TK - and the 4th man in the fire with Shadrach and his friends. (thanks for the book recommendation also!) I wish you did NOT have to be facing these kinds of crazy decisions. Will be praying for His Hope and Life to surround and keep you. I wish I could watch your kiddos also if you ever have to go through all of this. Trusting that God will not miss any of the details. with love and as our son says - "Big Hug" my friend.

  26. Yeah, it does stink being an adult sometimes. I'm so sorry. I wish the very best for you, and send you strength, as you take the next step.

  27. Wow. I'm really, incredibly sorry that you even need to consider any of this at your age (or any age!)--we are thinking of you a lot. Suckiness all around, for sure. Heavy stuff, and a heck of a lot to think about. :-(

  28. good grief. how stressful...but I agree w/ everyone else--go get that test NOW! For your sake, for Pink and Blue's someone else said, the results are already there. Once you get them then you can move forward--in which ever direction. And we'll all move with you. Promise.

  29. Gah. I'm so sorry you're dealing with this. My sister-in-law tested positive and wrote about her experience (decision making, opererations) on her blog, She's very active on a fb group and has found tremendous support through it. Sending you oodles of positive juju.


Over to you!